I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday!

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Jamie Myrah joined PHA
Canada as the organization’s first Executive Director in
January 2016. She is responsible for overseeing all of their
operations, including providing support and guidance to the staff
in delivering programs and services. She also works closely with
the Board of Directors on governance, strategic planning, public
and government relations, and fund development. She works closely
with Canada’s PH community to create changes that improve the lives
of all those affected by pulmonary hypertension. In this
episode, Jamie discusses PHA Canada's 10 year anniversary.

I'm Jamie Myrah, and I'm the Executive Director of the Pulmonary
Hypertension Association of Canada. I am based in Vancouver,
British Columbia. I joined the organization just over two
years ago, and I've been working in rare disease communities
specifically for the last five years.

Well, my background is really originally in HIV. Eventually,
over the years, I've worked in cancer and chronic disease
prevention. After spending some time in law school and returning to
Vancouver looking to get back into the community based health
sector, an opportunity came up in rare disease. What I found really
ended up attracting me to rare disease communities was the
commonality that I felt to my experience in HIV. That very grass
roots, driven, "nothing about us without us" culture, was very
appealing to me. It felt very comfortable and really fed my desire
to work on issues, in particular around health inequities. I think
the connections between PH and other disease communities, including
rare disease communities is one of the unique and interesting
things about the work.

April 1st was PHA Canada's official 10 year anniversary.
Throughout this month, we are celebrating online in communities
across the country and then looking forward to many other
interesting and fun activities throughout the year. Of course, you
know, in Canada, we're a multiethnic, multilingual, multicultural
country, and we do as a national organization operate in both
official languages of English and French. All of our materials
including for the anniversary and the special edition anniversary
website are all available in both languages. We look forward to
celebrating with our friends in Quebec, as well.

In terms of some of the differences that exist around the
country, we're quite fortunate in that we have a fantastic network
of expert PH centers right across the country. That doesn't mean
that there aren't barriers to accessing that treatment for folks
especially who live in really rural and remote communities. But if
you're in a major center then you're fortunate enough that you have
expert care available right there likely in your hometown. But when
it comes to actual medications, we are increasingly starting to see
some differences in accessibility from province to province. I
think historically, for the most part, people have had decent
access to the first generation therapies. But as the PH landscape
changes, as the drug approval process becomes more complicated and
as there's more and more rarities, these drugs to be paid for by
public payers in particular, it's becoming more difficult, and we
are seeing differences in availability of new drugs in different
parts of the country.

I think most recently one of the exciting things that has
happened is that we have seen new approvals for new drugs happen
very recently, and I think that is, at least in part, a direct
result of the PH community working really hard over the last two
years to educate their elected representatives and the decision
makers in their provinces about the importance of these new
therapies, especially when there's novel therapies coming to
market. They've really taken a lot of leadership, patients have
been really committed to getting their stories out there. We've
started to see some progress. I think that has been an exciting win
for us in a sense recently. That being said, there's a lot more to
be done. Like I said, when we see progress in some areas, it also
makes the lack of progress in other areas sometimes even more stark
as we start to see these real differences occur.

One of our other main focuses right now is around educating
healthcare providers around PH and really raising awareness around
the diagnosis of PH with the aim of reducing delays to diagnosis.
We launched a new renewed website for our "Sometimes It's PH"
campaign. We've got new materials that we're working really hard on
getting out into the community. For instance, this month we
exhibited at the Canadian Respiratory Conference where we had and
exhibit there and educating all of the doctors present about PH.
Not just its diagnosis but also on how to then refer patients to
the expert care centers that do exist across the country.

We're super excited that World PH Day is just right around the
corner. We've got several things on the go. I think most excitingly
for us here at the head office in Vancouver is that this year we're
going to be having an in person event here in Vancouver. We're
going to be returning to the public promenade of the central branch
of the Vancouver Public Library, where the organization actually
had a big awareness event back in 2012. We're going to be returning
to this location, which is a great high visibility, high public
area. We're going to have a public awareness event using the six
minute walk test and some other activities that we have right there
in the public promenade. In addition to that, we're also going to
be inviting our local community members, our patients and their
families to come out and join us for a short program where we're
going include a research update from the folks at the Vancouver
clinic and then also continue to celebrate our anniversary.

In addition to that, we are going to be once again this year
having our Paint Canada Purple public illumination campaign where
we see monuments lit up in purple throughout the country. Once
again, raising awareness in those communities for World PH Day.
Finally, we are always looking forward to the activities of our
community members who often use World PH Day as an opportunity to
raise awareness but also to raise funds for PHA Canada. This year,
in particular we have a fantastic event happening in Ottawa,
Ontario where they are having their first ever masquerade ball in
support of PH including PHA Canada.

The special edition anniversary website can be found at phacanada10.com, in both English
and French. I encourage people to come the anniversary website
where we're going to be recognizing the folks that really built
this organization over the years and who've been instrumental to
providing patient support, education, building awareness in Canada.
We invite you to join us there and celebrate those leaders and
thank them for ensuring that today in Canada when you're diagnosed
with PH there's a place for you to turn and you will never have to
face PH alone.

About the Podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday.
Through this series of impactful, insightful and, most importantly, hopeful stories from members of the global pulmonary hypertension community, we hope to further the global #phaware conversation as well as to capture, engage and enable misdiagnosed and undiagnosed PH patients because early diagnosis and treatment can mean the difference between life and death.
Topics range from the importance of early diagnosis and global PH awareness, to the impact of clinical trials to how patient support and advocacy are paramount to battling this disease.
Learn more about PH at www.phaware.global